Skip to main content

Table 1 Recommendations derived from the literature

From: Pain points in parents’ interactions with newborn screening systems: a qualitative study

Recommendation Reference
– Parents should be informed of results from a known clinician [6, 13, 17]
– Care should be taken with leaving voicemail messages and sending letters informing individuals of positive NBS results without clear follow-up directions [6, 13]
– The nature of the disease should be explained adequately [6]
– Parents should be connected with families experiencing the same condition [6]
– Care should be taken in establishing rapport with parents before relaying a positive result [6]
– Advising parents that test results are likely to be false positives is undesirable. Precise percentages should be used to convey risk [6]
– Avoid downplaying the severity and clinical significance of the disease [6]
– If clinicians are unable to answer questions, then parents should be provided with educational materials while awaiting an initial appointment or consultation with an expert [6]
– Provide test results and counseling to all parents (not just the birth mother) [13]
– Provide parents with educational materials related to the disorder [17]
– Provide educational materials in minority languages [17]
– Provide education regarding the NBS program in the third trimester (i.e. not at delivery when parents are overwhelmed) [17]